**Experiences of Using Pathways and Resources for Participation and Engagement (PREP) Intervention for Children with Acquired Brain Injury: A Knowledge Translation Study**

#### **Melanie Burrough 1,\*, Clare Beanlands <sup>2</sup> and Paul Sugarhood <sup>2</sup>**


Received: 18 October 2020; Accepted: 20 November 2020; Published: 24 November 2020 -

**Abstract:** *Background:* Children with acquired brain injury experience participation restrictions. Pathways and Resources for Participation and Engagement (PREP) is an innovative, participation focused intervention. Studies have examined PREP in Canadian research contexts, however little is known about implementation in real-life clinical settings. This study aimed to understand experiences of clinicians implementing PREP in a UK clinical context, with a focus on implementation processes and key factors for successful implementation. *Methods:* A qualitative single-site 8-week knowledge translation intervention study, guided by an action research framework, explored clinicians' experiences of implementation. Six occupational therapists (OTs) working in a neurorehabilitation setting participated. The therapists provided two intervention sessions per week, over four weeks for one child on their caseload. Planning, implementation and evaluation were explored through two focus groups. Thematic analysis was used to analyse data. *Results:* Two themes, "key ingredients before you start" and "PREP guides the journey", were identified before introducing PREP to practice. Four additional themes were related to PREP implementation: "shifting to a participation perspective", "participation moves beyond the OT", "environmental challengers and remedies" and "whole family readiness". A participation ripple effect was observed by building capacity across the multi-disciplinary team and families. The involvement of peers, social opportunities and acknowledging family readiness were key factors for successful implementation. *Conclusions:* The findings illustrate practical guidance to facilitate the uptake of participation-based evidence in clinical practice. Further research is required to understand aspects of knowledge translation when implementing participation interventions in other UK clinical settings.

**Keywords:** participation; participation interventions; knowledge translation; environment; acquired brain injury; occupational therapy

#### **1. Introduction**

Over 1.2 million people suffer brain injuries in the UK annually, with up to 50% of incidences observed in children and young people (CYP) [1]. The most common causes of acquired brain injury (ABI) result from acute trauma, brain tumours, infections, anoxia and childhood stroke [2]. It is estimated that at least 350 children per year in the UK suffer a severe ABI requiring in-patient neurorehabilitation to support recovery [2].

Participation, defined as involvement in a life situation [3] is considered fundamental for children's development of physical and mental health, happiness and life satisfaction. Eighty per cent of CYP in one study experienced reduced social participation after neurorehabilitation, with all families identifying difficulties with attitudes and social support [4]. Participation following ABI is less frequent when compared with typically developing peers [5], with restrictions in structured community activities, social events, play and household chores [6]. CYP with ABI are more likely to experience participation restrictions due to ongoing physical, communication, emotional and behavioural needs [5], increasing the risk of social isolation and poor health.

Interventions in neurorehabilitation to remedy long-term effects of ABI have traditionally aimed to remediate body functions, attempting to change impairments such as motor, cognitive and sensory deficits [7]. Emerging research however suggests that clinicians working in children's rehabilitation should primarily offer interventions to improve children's participation across a range of home, school and community occupations [8]. Attendance in diverse meaningful activities and involvement [9] are key attributes to participation interventions.

One participation intervention, known as Pathways and Resources for Engagement and Participation [10] (PREP), has shown that children's participation can be influenced by modification of the environment only [11]. PREP is an innovative participation intervention protocol which encompasses five steps: (1) make goals, (2) make a plan, (3) make it happen, (4) measure process and outcomes and (5) move forward ([10], p.6).

PREP differs from traditional remedial approaches as it aims to identify strengths and barriers within a child's natural environment, as opposed to changing underlying impairments such as motor coordination or cognition. PREP offers a practical framework to set participation goals in chosen occupations [10]. A coaching approach is adopted when working with the child and family to agree on an intervention plan with solution-focused strategies to reduce environmental barriers.

Key research offers early evidence for PREP with youth aged 12–18 years old. Two interrupted-time series studies found that following 12 weeks of intervention, goals set in leisure domains using the Canadian Occupational Performance Measure (COPM) [12] demonstrated statistically significant improvements for youth [7,13]. Barriers to goal satisfaction were noted in poor societal attitudes, community opportunities and physical accessibility [13]. A recent formative study also highlighted that not only does PREP support changes in participation, but changes were also observed in motor function, cognition and activity performance [14].

Another study examined clinician perspectives when using PREP over a 12-week intervention period, for CYP aged 12 to 17 years old with physical disabilities [8]. Clinicians experienced a new understanding of participation interventions [8]. Notably, therapists *"did not perceive it as "true" therapy if "hands-on" treatment was not provided"* ([8], p. 13,396) questioning the readiness and knowledge translation required when introducing a participation intervention in practice.

There are no available studies exploring participation interventions in children's neurorehabilitation, therefore highlighting a gap in practice. PREP offers emerging evidence when working with youth with physical disabilities; however, it has not yet been studied in a real-life clinical context for CYP with ABI. This study therefore aimed to understand experiences of OTs implementing PREP in a UK neurorehabilitation setting for children aged 0–18 years old. Although debate exists around the complex concept of knowledge translation [15], this study assumed a knowledge translation definition of forming partnerships between researcher and participants, with a flow of information exchange [16] to influence evidence-based clinical practice.

Study objectives were to:


#### **2. Materials and Methods**

#### *2.1. Study Design*

This study was a qualitative single-site 8-week knowledge translation intervention study, guided by an action research (AR) framework. The study took place in a 25 bed neurorehabilitation setting for CYP aged 0–18 years old with ABI. CYP received a goal-led 24 h rehabilitation programme, supported by an integrated team of professionals, including neurorehabilitation consultants, occupational therapists, physiotherapists, speech and language therapists, psychologists, music therapists, nurses and carers.

A criterion sample of qualified OTs working within the neurorehabilitation setting and treating CYP with ABI were asked to participate. The size of the sample was limited by the total number of OTs working within the setting. All six OTs working within the setting participated. Participants were invited to participate via a letter sent by an independent non-clinical professional. A participation information sheet detailed the research question, aims and methods. Informed consent was obtained by providing OTs with a two-week period before being offered the opportunity to provide written consent to participate. Participants were invited to take part in two focus groups, a follow-up meeting and an intervention phase, over a total period of seven weeks. All six had the right to withdraw from the study at any time.

The first focus group was conducted initially to explore and prepare for the introduction of PREP to practice. Action planning took place two weeks later, during a follow-up meeting. Initial themes were shared with participants from focus group 1 and group participants designed and agreed upon an implementation action plan (Tables A1 and A2). The participants selected one child on their caseload to offer two 45 min PREP intervention sessions per week, over a four-week period. PREP intervention was offered as part of routine neurorehabilitation treatment, therefore informed consent from the CYP and families was not required. The CYP selected had already received a multi-disciplinary initial assessment, were undertaking active rehabilitation treatment and were not preparing for immediate discharge home.

Participation goals were set by using either goal attainment scaling (GAS) [17] or the COPM [12] before introducing PREP intervention. Three OTs set a participation goal directly with a CYP on their caseload. Three OTs set participation goals with parents, caregivers and family members as they were unable to directly set goals due to their level of cognitive impairment following an ABI or developmental ability. A second focus group was conducted following the four-week PREP intervention period and evaluated the OT's experiences.

#### *2.2. Procedures*

AR frameworks assume collaborative approaches and the formation of mutual enquiry [18]. At the time of study, the first author held 12 years of post-qualification experience and was the professional lead, band 8 OT within the service. As the first author also held a caseload and team manager responsibilities, the relationship between the first author and participants needed to be carefully considered. A mutual partnership between the study participants and the first author was sought, aiming to empower participants and reduce perceptions of seniority. With this in mind a professionalising action research framework was selected to guide the process. Professionalising action research 'seeks improvement in professional practice ... on behalf of service users' ([19], p. 155), whilst promoting partnership between the first author and participants.

In accordance with professionalising action research, a work-based action research cycle was selected [20], providing a cyclical and reflective framework for PREP implementation (Figure 1). This cycle was chosen as it was developed for use in work-based professional settings. The AR cycle consisted of one preliminary step and four main phases.

#### *Int. J. Environ. Res. Public Health* **2020**, *17*, 8736

**Figure 1.** Action Research Cycle adapted from ([20], p. 9).

#### 2.2.1. Constructing

One cycle of AR was completed over seven weeks, consisting of four phases. The constructing phase involved participants defining and critiquing participation interventions. PREP was selected as participants felt it provided structured intervention, well-suited to rehabilitation and members had not previously used this intervention.

#### 2.2.2. Planning Action

The planning action phase lasted two weeks, and involved the first focus group to establish the planning required before introducing PREP to the routine clinical practice. After this two-week period, a subsequent follow-up meeting was held to clarify the focus group findings, share themes and agree on an implementation plan.

#### 2.2.3. Taking Action

The taking action phase of the cycle was based on the implementation plan from the first focus group and was completed over four weeks. Two PREP intervention sessions were offered each week for one CYP on each participant's caseload. PREP was introduced to the multi-disciplinary team via e-mail and during team meetings to familiarise professionals in the wider team with this new intervention approach. During PREP implementation, participants requested peer support, therefore peer group support sessions were organised and facilitated by a clinical researcher, independent of the study. Budget funds were made available for PREP activities.

#### 2.2.4. Evaluating Action

Finally, the evaluation phase was completed over two weeks. Actions were evaluated through a second focus group involving the first author and all participants. Reflections examined all stages of the action research cycle, implementation of the action plan and participant experiences.

In children's occupational therapy there are current challenges—in the generation of evidence-based research and the integration of this into clinical practice [21]. The AR framework therefore provided an opportunity for OTs to translate knowledge into practice and enhance the potential for sustainable change.

#### *2.3. Data Collection*

Focus groups were deemed suitable for AR to provide joint discussion around shared implementation experiences, whilst triggering critical reflections. The first author assumed the role of focus group moderator and guidelines were agreed to ensure all members adhered to confidentiality. The first author advised that seniority was not considered advantageous and aimed to draw out all of the OTs during discussions. The first focus group, lasting 1.5 h, included five semi-structured questions to explore the introduction of PREP to practice (Table A3). The focus group questions were adapted from an existing research study exploring clinician perspectives of using PREP within a research setting [8], in order to reduce moderator leading questions and allow for probing.

The second focus group used nine semi-structured questions (Table A4) to evaluate participant experiences of implementing PREP in practice. The second focus group lasted 2 h, and questions were again adapted from existing research [8] with a focus on implementing PREP in a neurorehabilitation setting, evaluating the OT's experiences and identifying factors that influenced PREP implementation.

The findingswere digitally recorded and then transcribed verbatim by the first author. Confidential data such as child or organisational names were replaced with pseudonyms. All digital recordings were transferred and stored on an encrypted PC to comply with data protection principles.

#### *2.4. Data Analysis*

The content of each transcript were read and re-read by the first author to increase familiarisation, note initial ideas and search for patterns. Braun and Clarke's six step thematic analysis [22] was applied to analyse focus group transcripts. To gain an in-depth understanding of the data, transcripts and initial codes were derived by the first author, highlighting data relevant to the research question across the whole data set and collating particular quotes that were relevant to each code. Complete coding was undertaken to ensure relevant words and phrases were coded. At this point, transcripts and initial codes were shared with the second and third authors to check independently of the first author. All authors then searched the codes for potential themes, drawing data together which was relevant to each suggested theme.

The next stage involved drawing together a thematic map for themes. The initial themes derived from focus group 1 were shared with the participants during the follow-up meeting, providing an opportunity to member check themes and further refine themes. Further defining and naming of themes from both transcripts took place with the second and third authors, with discussions around definitions for each overarching theme. During the six-step analysis, themes and subthemes were reflected upon, checked with the original transcripts and analysed with direct quotes to ensure that thematic mapping derived meaning from the entire data set.

Data were collected from the criterion sample at set points during the AR cycle. This did not allow for continued recruitment or data collection until the concept of saturation could be achieved. However, the in-depth focus group discussions using open questions created sufficient data to gain a plausible understanding of the issues. The iterative nature of data collection and analysis allowed for detailed exploration of themes as they emerged and developed over the course of the study.

#### *2.5. Study Rigour*

As the aims of this study were to implement PREP in this particular neurorehabilitation setting, the findings cannot readily be generalised to different population groups. No exclusion criteria were set and all OTs regardless of gender, ethnicity, age and experience were eligible. The study sample was limited by the number of occupational therapists working within the setting.

The study established trustworthiness through principles of credibility and transparency by member checking, following the first focus group. The project was time limited, therefore themes from focus group 2 could not be shared with participants in the same way as focus group 1. Triangulation was considered in gaining a variety of participant views, although increasing findings through representation of different data collection methods and study co-design was not possible due to time constraints.

The first author was aware of the close connection to participants during routine clinical practice, throughout each stage of the AR process and during data analysis. In routine clinical practice the first author also provided support and supervision to the team of OTs, which may have influenced study findings. As part of the implementation action plan participants identified the importance of peer support during the taking action phase. A clinical researcher, independent from the study, facilitated peer support groups during the action phase, which provided a space for reflective thinking, without the influence of the first author. The first author and clinical researcher met to reflect on the peer group sessions before the second focus group, giving the first author an external perspective of the taking action phase.

A reflective diary was completed by the first author throughout the study to increase reflexivity [23]. Reflective diary themes considered the potential influence of the first author and the participant relationship on study findings. Themes highlighted the need to draw out all participant views during focus group discussions. The first author reflected on the routine responsibility of professional lead OT, whilst balancing the role of focus group moderator. Diary experiences and reflections were shared and discussed with the other authors to increase transparency. This supported the first author with allowing for enough time and space to draw out all participant views and experiences.

#### *2.6. Ethical Considerations*

Ethical approval was granted from the School of Health and Social Care Ethics Committee at London South Bank University on 10th May 2017, study number 17/A/32. Permission from the organisation's research board was given. All participants gave their informed consent for inclusion before they participated in the study. This study was classified as a service evaluation; therefore, Health Research Authority approval was not required.

#### **3. Results**

#### *3.1. Sample Characteristics*

Six OTs participated in the study, with varied levels of experience and seniority. Table 1 outlines participant characteristics.

#### *3.2. Emerging Themes*

Six themes were identified from the data. Two overarching themes related to establishing the planning required before introducing PREP to routine clinical practice and four themes related to implementing PREP and evaluating OT experiences of implementation. Each theme will be reported on in turn. All names have been replaced with pseudonyms.


**Table 1.** Sample Participant Characteristics.

Two themes, before introducing PREP to practice, included: "key ingredients before you start" and "PREP guides the journey" (Figure 2). Four additional themes were related to PREP implementation: "shifting to a participation perspective", "participation moves beyond the OT", "environmental challengers and remedies" and "whole family readiness" (Figure 3).

**Figure 2.** Structure of themes generated by the data in focus group 1: before PREP introduction.

#### *Int. J. Environ. Res. Public Health* **2020**, *17*, 8736

**Figure 3.** Structure of themes generated by the data in focus group 2: PREP implementation.

#### *3.3. Key Ingredients before You Start*

An overarching theme emerged from the planning stage of the action research cycle when preparing to implement PREP for the first time: *key ingredients before you start.* Key ingredients in preparation for PREP use were suggested to set and work on one participation goal at a time, engage outcome measurement and build a participation team.

One key ingredient was recognised as working on one participation goal at a time. This took a different direction than usual routine practice, which involved working on multiple activity focused goals. Sarah highlighted:

*"You get to the end of a placement where you feel like you have moved ever so slowly or not at all in these large number of (goal) areas."*

Sarah went on to say that:

*"One participation goal might be greater than helping the family move forward with five or six."*

Using PREP intervention to work on one participation goal at a time appeared to offer opportunity for focused, high intensity therapy to increase children's participation. Katy suggested:

*"It drives that intensity doesn't it? in terms of intervention, which we know people need, but if you're covering a number of goals, how do you get that intensity of intervention, you know giving lots of repetition, lots of practice.*"

Katy's view of using PREP to work on one goal at a time supported the need for children to receive intensive, repeated input when receiving participation focused intervention.

Similarly Hannah gave examples of working on participation goals such as visiting the local park with family. Hannah commented that PREP intervention is:

*"Very clear focused, repetitive and you make progress.*"

Working on one participation goal was recognised as needing early prioritisation, to guide therapist and family focus during the rehabilitation journey. Another key ingredient to prepare for PREP introduction was considered to be engaging in the use of outcome measurements such as the COPM. The engagement of outcome measurements supported OTs with underpinning changes in participation goals. Sarah reflected when preparing outcome measurement for PREP intervention it enables OTs to:

*Int. J. Environ. Res. Public Health* **2020**, *17*, 8736

*"Stay focused, do the COPM, that's your core thing.*"

Sarah also described that the suggestion of completing COPM more frequently

*"Felt like a big shift.*"

However, there were different feelings about how frequently outcome measurement was required when preparing to introduce PREP to the CYP and families. When considering outcome measurement using the COPM, Beth described frequency of measurement as:

*"Not as regularly as twice a week, parents would find that too much*"

In contrast Emma felt that when introducing PREP intervention, outcome measurement should:

*"Be more than once a week.*"

There appeared to be consensus when engaging in outcome measurement before PREP introduction; however, OTs felt that they required different time frequencies in outcome measurement according to the individual CYP and family needs.

Prior to PREP implementation, the OTs recognised the need for the key ingredient of building a participation team. It was suggested that an integrated approach, drawing on members of the multi-disciplinary team, the child, family and supports in the community (for example sports coaches) was needed. Alice commented that there should be:

*"Shared responsibility for a participation team"* and this needed to be developed during implementation *"because I feel like the understanding and that shared responsibility of the participation team isn't there yet.*"

Communication and collaboration appeared to form initial building blocks for a participation team.

#### *3.4. PREP Guides the Journey*

The PREP manual was seen as a map and practical guide to keep the OTs on track. Sarah outlined the PREP process as:

*"You set goals, you make a plan, you make it happen and then you check it.*"

Before implementation, the PREP process was considered as a tool for keeping OTs focused by working through goal setting and treatment planning logically. Katy highlighted:

*"If you do work through the resources you've got in this you'll be looking at it thinking oh I actually haven't done what I'm meant to be doing this week, I've got to keep on this, this is my plan, I'm using this tool, you've got something really specifically to focus you.*"

Beth commented that PREP will *"structure the plan of intervention"* and reported *"if someone else needs to follow the process that you have done, it starts to kind of break down the di*ff*erent components."*

It appears that PREP offers a concise map to form a measurable treatment plan, with the opportunity to involve different members of the multi-disciplinary team to follow the process if needed.

Finally, in order for PREP to guide the journey, it was felt that PREP should be introduced at the start of a rehabilitation journey to clarify family expectations. Beth highlighted that early expectations of neurorehabilitation programmes can include a focus on *"walking and talking."* At the start of rehabilitation Hannah commented:

*"They're not used to thinking about participation yet, helping them to understand that. If you're going to the park, they're not just going to the park for fun, it's showing them why we're doing that and the skills we're using and how that's rehab.*"

Introducing PREP early on appeared to introduce participation goals and intervention early on in the rehabilitation journey. Alice however recognised that participation may have changed and questioned whether the child would be: "*prepared to take on or participate in something in not its true or original form."*

Four themes were identified when implementing PREP and evaluating OT experiences of implementation:*shifting to a participation perspective; participation moved beyond the OT; environmental challengers and remedies; and whole family readiness* (Figure 3).

#### *3.5. Shifting to a Participation Perspective*

Adopting PREP intervention meant letting go of traditional, remedial therapy approaches focused on component skills or impairments in mobility or cognition and shifting to a participation perspective. For some therapists PREP offered an intervention approach to focus on participation. Sarah illustrated:

*"PREP kind of underpins why we're in this job because you want people despite health problems to enjoy life and participate in what life has to o*ff*er* ... *"*

Emma recognised that PREP offered a new, flexible approach to work on participation even when a young person may not have achieved skill mastery:

*"Playing play station 4* ... *he's indicated that he would really like just to try and see what he can do, I probably wouldn't have thought about doing that because I know it's going to be really really di*ffi*cult."*

For others however shifting to a participation perspective felt anxiety provoking, particularly when attempting coaching to empower families to solve problems. Beth reflected on her own *"hesitations"* and Alice highlighted:

*"Not having experience of coaching techniques, of managing di*ffi*cult situations or having those tricky conversations with parents, because I don't have that knowledge and experience I think is probably why I didn't do some much of that* ... "

Therapists identified that peer support, facilitated by an experienced therapist would address feelings of apprehension and changes to intervention practices.

#### *3.6. Participation Moved Beyond the OT*

PREP built capacity with families and the multi-disciplinary team by using the pathway to form solutions independently of the therapist. Not only did the therapists feel that young people demonstrated more insight into participation challenges than they anticipated, some therapists felt that CYP and families began to generalise problem-solving techniques to other participation opportunities. One young person initially achieved his participation goal of going to a local fast food outlet with his family. Soon after this the young person and his family identified other community experiences that they wanted to achieve whilst undergoing neurorehabilitation. Alice reflected:

*"I was very taken aback by how he had come up with all of these strategies, it was so important that they'd come from him. He's gone to the bakery, to the harvester (restaurant), to the seaside at weekends. His Mum and sister have done it, they'll say 'well where shall we go next and then he comes up with the next idea and then what do we need to do? oh well I need to be able to walk outside, I need to be able to stand up to put the pennies in the slot machine you know he's coming up with those things."*

Beth discussed a participation goal around a Father and young person making a train journey from the rehabilitation centre to home:

*"I went and spoke to Dad about if I was doing that trip what I would do and I would look for. Dad took that on board and I spoke to him yesterday and he said 'yea it was fine' he already knew that (name) would know the way home and was physically able to do it but his concerns were still (name's) behaviour and communication di*ffi*culties.*"

Beth went on to describe how she developed a strategy with this young person:

*"Maybe you could learn how you say I have di*ffi*culty with talking and he said words are hard so he's made his own little script for that.*"

Once therapists shared knowledge of local community activities and leisure opportunities, CYP and families appeared to increase their active involvement in participation experiences. After one CYP achieved his original participation goal, he started to apply his skills to familiarise himself with car journeys to participate in community outings, Alice described:

*"They built up their car parking, car driving practice, they built up every night by themselves, they visited local areas*"

Therapists perceived attitudinal changes of professionals during increased young person and family involvement, leading to greater ownership and shared management of participation challenges.

Through the development of a shared participation vision and action plan, PREP was perceived by one therapist as causing "*ripple e*ff*ects" (Sarah).* To illustrate, Emma highlighted:

*"I had some positive engagement with care sta*ff *who identified there were some things they could do with the young people outside of sessions that they wouldn't have done otherwise.*"

In some cases, members of the multi-disciplinary team began contributing to PREP planning and used strategies without OT involvement. Ripple effects were seen not only for CYP and families but also reaching wider members of the multi-disciplinary team.

#### *3.7. Environmental Challengers and Remedies*

A number of environmental factors were recognised as challengers and barriers to successful participation. Hannah recognised that PREP *"helped get that real participation goal, think about the barriers and facilitators and steps towards it."* Most barriers were perceived to be physical environmental restrictions including 'noisy environments,' 'wheelchair accessibility' and 'the temporary nature of the rehabilitation centre'. Other barriers however reflected social factors such as 'his friends aren't here,' whilst other CYP were worried about societal reactions to communication difficulties following a brain injury.

Some environmental factors were observed to remedy participation challenges. Social and familial relationships appeared to hold great importance in remedying participation challenges. For one young person, social engagement appeared to hold greater importance than the activity itself, as Alice suggested:

*"Riding your bike is not the meaningful part, it was more about doing it, that feeling of belonging, being with the people that they wanted it to be with, that sense of socialisation in the way that he wanted it to be.*"

Being with family and peers was perceived as crucial for this young person to feel valued and involved:

*"It was that he wanted, to go with his Mum and his sister, he wanted to be able to have that whole experience, it wasn't about could he order, could he eat it safely, could he sit in the car, he wanted to tell Mum o*ff *every time that she sung in the car on the way there." (Alice)*

Although some CYP were unable to engage with peers in their typical home, school and community environments, they often wanted to participate with new peers during rehabilitation. Sarah illustrated that one young person reported "*no, no we really want to do it together."*

#### *3.8. Whole Family Readiness*

The concept of family readiness influenced therapist abilities to implement PREP. Notably, family anxiety and stress were acknowledged as key influencers to engagement in participation, goal setting and finding solutions. For instance, Emma highlighted:

*"The families have got so much going on, the family I worked with they've got lots of other anxieties and worries, for them to try and focus and think about something else was quite hard.*"

Factors such as re-housing, changes in schooling and the young person's mood were identified as areas of consideration before introducing PREP. Changes to participation patterns and loss were also acknowledged. Some young people wanted to participate *"when they were better,"* whilst others were aware of *"who they were and now that's di*ff*erent" (Emma).* Alice reflected on perceiving children's participation in a new way after brain injury:

*"Whether the child is going to be able to participate in the way they did before and if they can't are they happy to accept the change in how they participate? That wasn't what he'd done before so in his eyes well that wasn't achieving it.*"

Contrastingly, resilience and strong family networks appeared to reduce family anxiety and stress to increase readiness for PREP intervention. One family had another child with a disability and Sarah found that they drew on past experiences to overcome participation challenges:

*"The family had their own experiences prior to injury with another sibling in the family who has special needs, and so adjustment to their young boys' brain injury was very di*ff*erent to other families. Their acceptance of needing to do things di*ff*erently, to be innovative about the way you do things, their personal circumstances have really meant that they don't have that as a barrier, adjusting to disability.*"

#### **4. Discussion**

This study aimed to understand how OTs implemented PREP, a participation intervention, in a UK clinical context. The study explored planning required before introducing PREP to routine clinical practice and evaluated the OT's experiences of implementation when working with CYP aged 0 to 18 years old with ABI in a neurorehabilitation setting. Study findings highlight important messages for practice, when introducing a participation intervention for the first time.

Several key ingredients were acknowledged in order to introduce PREP to practice, notably setting and working on one participation goal at a time, engaging outcome measurement and mobilising a participation team. Enabling the child and family to form a team to work on one participation goal appeared to increase the intensity and focus of the intervention. Notably active ingredients such as caregiver support and a supportive environment for the child have previously been recognized to improve CYP participation outcomes [24], echoing the value in identifying a supportive participation team to work on the goal with the child.

Implementation of PREP initiated new directions in practice. Although participation outcomes were enhanced, participants often felt anxious when adopting new ways of working, sometimes feeling that they may overlook rehabilitation goals in activity or body functions and structure domains [3]. Reluctance to shift to a participation perspective is consistent with previous research, challenging the nature of the environment and therapeutic need to work on personal factors [8]. Two practical steps were recognised to support early adoption of PREP. Firstly, peer support offered space for reflection, problem solving and sharing PREP strategies. Additionally, training on coaching techniques was suggested to enhance knowledge in order to explore participation challenges.

PREP enabled extension of knowledge and built capacity with others. Knowledge sharing allowed CYP and families to generalise problem-solving techniques to new participation challenges. One young person successfully achieved his participation goal of going to a local fast food outlet,

through developing participation strategies with his therapist. Following this success he then participated in other community experiences such as visiting the local bakery, restaurant and seaside without input from his therapist. Capacity building was also seen within the multi-disciplinary team. Another participant commented that care staff continued with participation strategies outside of intervention sessions. PREP was described as causing "ripple effects" suggesting that immediate successes grew outwardly with the support of the identified participation team. The participation team and knowledge sharing appear to be fundamental for successful implementation.

PREP was observed to prepare CYP for transition between neurorehabilitation and discharge to their local home, school and community. Previous research has shown that parents require support to build confidence in managing a range of complex difficulties following neurorehabilitation [25]. This study's findings suggest that PREP offers promising findings to equip families to support self-management of participation challenges following discharge. This approach is congruent with person-centered care principles of empowering families to self-manage health needs following illness [26]. Focusing on participation goals for discharge could therefore offer long-term quality of life and health benefits to families. Participation interventions appear to address the need for personalised care, which may result in a lesser need for intensive professional input in the community.

The environment was recognised as a salient factor during PREPintervention. Although environmental restrictions were experienced, environmental remedies were recognised as facilitators. Physical and social barriers included feelings of anxiety when leaving the neurorehabilitation centre, combined with unfamiliar and noisy environments. Existing peer relationships were not always present post ABI due to geographical distances, limiting support when working on participation goals. Once environmental challengers were identified, strengths could be drawn on to overcome these barriers. In this study feelings of belonging and engagement often overcame participation barriers. Some CYP requested to work on participation goals with peers also receiving neurorehabilitation. One CYP reported that, when bike riding, being with friends and socialising was more important than the activity itself. Another CYP visited a local restaurant and reflected that spending time with family and singing during a car journey made all the difference to his happiness and enjoyment. Identifying and drawing on strengths within the social and familial environment appeared to remedy initial participation challenges.

It is noteworthy that even though social skills may be disrupted or impaired post ABI, social experiences for young people receiving neurorehabilitation were most significant in remedying participation difficulties. Understanding social norms and boundaries can be challenging following ABI [27] however social opportunities and peer support were key participation influencers. Findings show that peer support can remedy participation challenges due to benefits of enjoyment, socialisation and the sense of belonging. In neurorehabilitation specifically, therapists may consider implementing participation interventions involving existing peer groups or creating opportunities for new friendships with peers who have experienced ABI.

Finally, family readiness was integral before PREP introduction. Family factors including anxiety, stress, mood and life changes such as re-housing and schooling were identified. Some families identified life adjustments, reflecting that aspects of participation may be lost or changed. Literature highlights that many caregivers experience grief, loss and family strain following ABI, often requiring a period of adjustment to their child's disability [28]. Conversely, one family drew on past experiences of supporting a sibling with a disability to help them overcome new challenges, increasing readiness for PREP intervention and reducing family anxiety. Consequently, when introducing PREP therapists recognised the need to actively listen to the family and CYP during their rehabilitation journey, whilst acknowledging difficulties along the way.

#### *4.1. Key Implications for Practice*

Key guidance and recommendations were identified for sharing application of knowledge when introducing PREP to clinical practice:


#### *4.2. Limitations and Future Direction*

This study contributes to a knowledge gap by offering guiding principles of how OTs can facilitate the uptake of PREP in a children's neurorehabilitation setting in the UK. Many earlier studies considered PREP use with youth. Key implications for practice from this study were considered for CYP ranging from 0–18 years old, however further studies may offer more specific guidance to differentiate recommendations for PREP use between younger children and youth.

Although key ingredients have been proposed for the introduction of PREP to clinical practice, they may not be transferable for use in other areas of paediatric occupational therapy practice. It would be valuable for future studies to examine perceptions of the proposed key ingredients to investigate transferability. Further action research cycles could offer the opportunity to evaluate key ingredients to introduce PREP to practice in different paediatric practice settings in the UK.

As this study did not examine the perspectives of CYP and families, future qualitative research would add further triangulation of views and experiences. Furthermore, a longitudinal study would be of interest to follow-up CYP participation experiences following discharge. It would be useful to understand whether families benefited from PREP intervention following discharge, and whether or not participation strategies were effective in home, school or community environments.

Finally clinicians would benefit from further practice guidelines to support implementation of participation interventions. This study somewhat offers a starting point for clinicians working with CYP who have experienced ABI to offer participation interventions in their clinical practice.

#### **5. Conclusions**

This study examined how occupational therapists can introduce and implement participation interventions in a children's neurorehabilitation setting. The study specifically examined PREP, a participation intervention aiming to improve children's participation through the identification of environmental barriers and facilitators [10]. This knowledge translation study considered knowledge and application to clinical practice to further contribute to the evidence base for participation focused interventions.

Findings offer practical principles to apply knowledge when supporting early adoption of participation interventions in practice, whilst building capacity to support generalisation of PREP strategies beyond therapist led intervention. The involvement of peers, social opportunities and acknowledging family readiness were key factors for successful implementation. Therapy-led *Int. J. Environ. Res. Public Health* **2020**, *17*, 8736

peer support and training in coaching were identified to remedy challenges when adopting a new participation perspective and directions in practice.

**Author Contributions:** Conceptualization, M.B; methodology, M.B.; formal analysis, M.B.; writing—original draft preparation, M.B; writing—review and editing, M.B., C.B. and P.S.; supervision, C.B. and P.S. All authors have read and agreed to the published version of the manuscript.

**Funding:** This research received no external funding.

**Conflicts of Interest:** The authors declare no conflict of interest.

#### **Appendix A**

**Table A1.** Follow-up meeting and implementation action plan (Shared candidate themes so far).



#### **Table A2.** Implementation Action Plan.

#### **Appendix B**

**Table A3.** Semi-structured questions for focus group 1.


Focus group questions adapted [8].

#### **Appendix C**



Focus group questions adapted [8].

#### **Appendix D**

*Abbreviation List*


#### **References**


**Publisher's Note:** MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

© 2020 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).

International Journal of *Environmental Research and Public Health*

## *Article* **Changes in Overall Participation Profile of Youth with Physical Disabilities Following the PREP Intervention**

**Colin Hoehne 1, Brittany Baranski 2, Louiza Benmohammed 3, Liam Bienstock 2, Nathan Menezes 2, Noah Margolese <sup>2</sup> and Dana Anaby 2,4,\***


Received: 8 May 2020; Accepted: 30 May 2020; Published: 4 June 2020

**Abstract:** The Pathways and Resources for Engagement and Participation (PREP), an environmental-based intervention, is effective in improving the participation of youth with disabilities in specific targeted activities; however, its potential impact on overall participation beyond these activities is unknown. This study examined the differences in participation levels and environmental barriers and supports following the 12-week PREP intervention. Existing data on participation patterns and environmental barriers and supports, measured by the Participation and Environment Measure for Children and Youth, pre-and post-PREP intervention, were statistically analyzed across 20 youth aged 12 to 18 (mean = 14.4, standard deviation (SD) = 1.82) with physical disabilities in three settings: home, school and community. Effect sizes were calculated using Cohen's *d*. Following PREP, youth participated significantly less often at home (*d* = 2.21; 95% Confidence Interval (CI) [1.79, 2.96]), more often (*d* = 0.57; 95% CI [−0.79, −0.14]) and in more diverse activities (*d* = 0.51; 95% CI [−1.99, −0.51]) in the community. At school, significantly greater participation was observed in special school roles (t = −2.46. *p* = 0.024). Involvement and desire for change remained relatively stable across all settings. A substantial increase in community environmental supports was observed (*d* = 0.67), with significantly more parents reporting availability of, and access to information as a support (χ<sup>2</sup> = 4.28, *p* = 0.038). Findings lend further support to the effectiveness of environmental-based interventions, involving real-life experiences.

**Keywords:** social participation; adolescence; intervention

#### **1. Introduction**

Participation, defined as involvement in life situations [1], involves being with others [2], and is critical to the development of physical, emotional and social well-being in youth with and without disabilities [3,4]. Through participation, youth can develop a sense of self, feelings of success and connectedness to their community [5]. Participation of youth is of particular importance not only because their participation levels decrease as they enter adolescence [6] but also because they face a challenging transitional phase to adulthood [7]. Indeed, youth living with disabilities report lower participation levels than those without disabilities at home, school and in the community [8,9]. Specifically, they experience lower participation frequency, lower involvement levels and poorer satisfaction with their participation profile [10].

Some of the key factors that determine the participation profile of youth with disabilities lie within their environment [11]. Recent scoping reviews reveal a range of common environmental barriers and supports which can affect participation [12–14]. Examples of barriers include physical inaccessibility, unsupportive attitudes of others and lack of knowledge about ways to adapt activities and equipment. Examples of supports include social support from family and friends and availability of information. Therefore, minimizing environmental barriers and building upon supports are promising intervention strategies for improving participation, especially for youth with disabilities, who might not yet have the necessary skills to manage environmental barriers to participation themselves [15]. Consequently, interventions that aim to improve participation via environmental modifications have emerged in the last decade. Examples include context-focused therapy for young children with cerebral palsy [16] and Teens Making Environment and Activity Modifications (TEAM) for youth with developmental disabilities [15]. The Pathways and Resources for Engagement and Participation (PREP) is another example of an environment-based participation-targeting intervention, which is designed for individuals across different ages and abilities [17] and employs a strength-based approach. This 12-week intervention provides youth and caregivers with one-on-one coaching to foster problem solving and self-advocacy skills in order to remove environmental barriers to, and build supports for participation [18].

In our recent study [19], PREP has been shown to improve the performance of youth with physical disabilities (n = 28) in three targeted, self-chosen, leisure community-based activities; yet, it has not been established whether this intervention could impact areas beyond its three targeted activities, resulting in overall changes in participation profile. Our prior research with a sub-sample of this cohort provides preliminary evidence of such an effect. Parents, through individual interviews (n = 12) [20], reported positive improvements in their child's physical, emotional and social states following PREP. Another investigation of youth receiving PREP (n = 13) [21] indicated a shift in the types of activities performed, such as increased participation in social- and school-related activities, as measured using the Aday app, which is a 24 h activity log.

To complement these findings, the goal of this study is to systematically examine the effect of PREP on overall participation patterns using a standardized assessment. This was done by investigating a novel, distinct aspect of our existing dataset (n = 28) [19]. Specifically, our primary objectives were to examine the effect of PREP on (1) youths' overall participation patterns in terms of frequency, involvement and desire for change in the home, school and community settings, and (2) the number of environmental barriers and supports to participation reported in these settings. A secondary objective was also set, exploring the association between baseline youth characteristics known to influence participation (in terms of physical functioning, motivation and family functioning) and rates of change of participation.

#### **2. Materials and Methods**

#### *2.1. Design*

A subsequent analysis of existing data generated by an Interrupted Time Series study previously conducted by Anaby et al. [19] was employed to detect overall changes in participation patterns following the 12-week PREP intervention. Specifically, participation patterns were examined at the first week of baseline (which lasted 4 weeks) as well as 4 weeks after the completion of the PREP intervention (12 weeks), resulting in a 20-week delay between pre- and post-points of time. The original dataset included 28 youths with mobility restrictions (i.e., due to cerebral palsy, spina bifida, musculoskeletal disorders), who were recruited from five major rehabilitation centers and two high schools in Greater Montreal, from both Anglophone and Francophone families. Youth who also had cognitive and/or communication impairments were included. Youth within the first-year post-severe brain injury, or within 4 months post orthopedic surgery, were excluded from the selection process, as their participation and functional levels may not have been stable.

Of the 28 participants from the original study, a total of eight participants were excluded from the current study. Six participants were excluded because additional questionnaires (Dimensions of Mastery Questionnaire—DMQ, Activities Scale for Kids—ASK, Family Environment Scale—FES) were not administered to them at baseline. Two additional participants were excluded from the analysis as either pre- or post-intervention Participation and Environment Measure for Children and Youth (PEM-CY) data was incomplete. Thus, our current study included data from 20 participants. The included (n = 20) and excluded (n = 8) groups had an equal female-to-male ratio. The mean ages were similar (n = 20, mean = 14.4), (n = 8, mean = 15.13), and both groups had the same median age (median = 14.5). Mann–Whitney U tests indicated no significant differences between the groups in terms of number of health conditions (U = 74.5; *p* = 0.80258) and functional issues (U = 54.5; *p* = 0.20408). For further details on the original study design, see Anaby et al. [19].

#### *2.2. Intervention*

The PREP is a 5-step intervention, i.e., (1) Make goals, (2) Map out a plan, (3) Make it happen, (4) Measure process and outcomes and (5) Move forward, aimed at improving participation in self-chosen activities by changing aspects of the environment and by engaging and coaching youth/parents. An occupational therapist met with each youth/family individually at their home/community where they jointly set three community-based participation goals that the youth aspired to engage in yet found difficult. Examples of desired activities included joining a sledge hockey team, taking cooking classes, going to the movies with friends and enjoying music in a social group, among others. A collaborative plan was then devised to identify and implement solution-based strategies for removing environmental barriers and leveraging existing supports. The therapist and family also built a "participation team" comprised of a range of stakeholders (i.e., family members, teachers, community instructors, volunteers, etc.) to assist in the execution of the plan. Further information about the intervention can be found in the PREP manual [17] and the online learning module [22].

To ensure treatment fidelity and adherence to PREP principles, all therapists (n = 6) completed a 6 h PREP training program. Ongoing expert consultation was also provided throughout the study. Additionally, intervention forms, completed by therapists, documenting strategies used in their interventions were reviewed. As expected, all intervention strategies illustrated modifications of the environment and none focused on changing the youth's impairment. Effective environmental strategies included improving physical accessibility, adapting activity equipment, finding available programs, providing information about transportation, informing community agencies about how they could adapt their programs and provide accessible services and improving attitudes of others through education [19].

#### *2.3. Procedure and Data Collection*

Informed consent and assent were obtained from parents and youth, approved by the Research Ethics Board of the Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal. At baseline, during the first meeting with the therapist, several assessment measures were completed, including the Participation and Environment Measure—Children and Youth (PEM-CY) to measure participation patterns, Family Environment Scale (FES) to assess family functioning (contextual factors), Activities Scale for Kids (ASK) to measure physical functioning (activity limitation) and the Dimensions of Mastery Questionnaire (DMQ) to measure level of motivation (personal factors). The PEM-CY was also completed at follow-up (week 20).

#### *2.4. Measures*

The PEM-CY is a parent-report measure that assesses participation frequency, involvement and desire for change across 25 sets of activities occurring in three different settings: home (10 activities), school (5 activities) and community (10 activities). Frequency is rated on an 8-point Likert scale (0 = never, 7 = daily) and level of involvement is ranked on a 5-point Likert scale (1 = minimally involved, 5 = very involved). Desire for change includes a 6-point nominal scale describing the type of change desired; however, for the purpose of this study it was treated dichotomously to indicate if a change in

each activity was desired (yes/no). The PEM-CY also measures environmental factors, including barriers and supports to participation, within each of the three settings (12 items for home, 17 items for school and 16 items for community). The PEM-CY demonstrated moderate to good reliability (test re-test reliability, 0.58–0.95, internal consistency 0.59–0.91) as well as ability to distinguish between children with and without disabilities, supporting aspects of construct validity [23]. Factorial structure of participation frequency and involvement across all three settings was confirmed [11]. This measure has been used with children with Spina Bifida [24].

The FES is a valid and reliable self-report questionnaire used to assess the social environment of families [25]. It is composed of 90 self-report items that can be separated into 10 subscales. This study focused on two of the subscales of family functioning, Active–Recreation Orientation (i.e., family's participation in social and recreational activities) and Intellectual–Cultural Orientation (i.e., family's interest in political, intellectual and cultural activities), as there is evidence that these two subscales influence participation outcomes among children with physical disabilities [26]. For each subscale, a summary score was generated by converting true/false answers into a standardized score ranging from 0 to 100, where a score of 60 or more indicates that the subscale area is present to a high degree in the family. This measure has also been used with children with musculoskeletal disorders such as rheumatoid arthritis [27].

The DMQ is a parent-report tool used to measure a child's self-perceived motivation. This measure contains 45 items, which assess the level of persistence to solve problems, mastery of tasks and the feelings associated with attempts of mastery. Parents indicate the degree that each item applies to their child using a five-point Likert scale. A general summary score ranging from 1 to 5 was generated, with scores of 5 indicating higher mastery motivation. This measure has been used with children with cerebral palsy [28], has adequate reliability and validity [29], and has been shown to be associated with children's participation [30].

Aspects of activity limitation which are associated with participation [31] were measured using the ASK. The ASK is a valid and reliable self-report tool designed to measure physical functional issues for children and youth, experiencing activity limitations due to musculoskeletal disorders [32]. It includes 30 functional activities separated into 7 sub-domains (e.g., personal care and transfers) that rate independent performance of each activity using a 5-point scale. A summary score ranging from 0 to 100 is generated, where 0 indicates the greatest disability. A global rating of physical disability is also generated: mild (75 to 100), moderate (35 to 74) and severe (<35).

#### *2.5. Data Analysis*

#### 2.5.1. Primary Objective 1—Differences in Participation Levels in Each Setting following the PREP Intervention

Setting-level and item-level mean scores of diversity (number of activities actually done), frequency (ranged from 0 to 7), involvement (ranged from 1 to 5), and number of activities in which parents wanted to see change were calculated pre- and post-PREP intervention.

Setting-level changes, i.e., changes in mean participation levels across an entire setting (home, school, community), pre- and post-intervention were analyzed using a paired t-test; this is based on the central limit theorem assumption that with a sample of 20 youth, the sampling distribution of the mean approximates a normal distribution. In cases where the number of responders was less than 20, a non-parametric test was used (Wilcoxon). Values of *p* < 0.05 were considered significant and 95% Confidence Intervals (CI) were calculated. Cohen's *d* was used to estimate effect sizes, where *d* = 0.2 is considered a small effect, *d* = 0.5 is medium and *d* = 0.8 is large. SPSS Software Version 25 was used for all statistical calculations. Data was also analyzed descriptively to identify direction and amount of change.

Item-level mean scores were calculated for participation frequency and number of youths engaged in each of the activities, pre- and post-intervention. All item-level comparisons were graphed using radar plots to visually analyze the data. Items of activities were analyzed for significance when the amount of change was more likely to represent a change in one category/point within the frequency scale (e.g., from "once in a week" = 1 to "few times a week" = 2- ). These values corresponded to a mean difference in frequency of greater than 0.5 points. Wilcoxon or paired t-tests were used depending on the number of responses per item. To reduce the number of item-level statistical comparisons, diversity scores (representing number of youths engaged in each activity) were only tested for statistical significance (using the Chi-square test) when a pre–post change was observed in at least 20% of the sample, an arbitrary set. Notably, item-level analyses were only performed for those setting-level mean scores which were statistically significant.

2.5.2. Primary Objective 2—Differences in Environmental Barriers and Supports in Each Setting following the PREP Intervention

Setting-level and Item-level scores for environmental barriers and supports were calculated preand post-intervention. Scores represent the number of parents (in percentages) who viewed the given environmental item as a barrier/support.

Setting-level mean scores, i.e., changes in the percentage of environmental barriers/supports reported in each setting (home, school, community) were analyzed using the same methods as objective 1: A paired t-test or a Wilcoxon test, as well as descriptively.

Item-level mean scores were calculated for each of the environmental barriers/supports, pre- and post-intervention. Items in which a change of at least 20% of the sample was observed were statistically analyzed using Chi-square tests. All Item-level comparisons were displayed using radar plots, in terms of percentage of parents who considered the given environmental item to be a barrier/support. These radar plots were used to analyze data visually.

2.5.3. Secondary Objective—Association between Youth's Characteristics at Baseline and Rates of Change of Participation

To examine the secondary objective, exploratory analysis was done to investigate factors associated with change in participation scores that were found significant in objective 1. Exploratory variables considered were: youth functional levels (number of functional issues reported, ASK total score of physical functioning) motivation (i.e., DMQ gross motor persistence, mastery pleasure, negative reaction, object-oriented persistence, social persistence with children, social persistence with adults) and aspects of family functioning (FES active–recreation orientation scale standard score, FES intellectual-cultural orientation scale standard score). To identify patterns/association between change in participation and the explanatory variables, change scores (post-score − pre-score) were calculated and plotted against the baseline scores on the explanatory variables. A loess smoothed line (with span of 0.75) was added to each scatterplot to help identify any patterns visually.

#### **3. Results**

#### *3.1. Participants*

Twenty youth (10 female) aged 12–18 years (mean = 14.4; standard deviation (SD) = 1.82) were included in this analysis. Up to seven health conditions were reported per youth (mean = 2.4, SD = 1.7; Interquartile range (IQR) 1 to 3), with the most common being orthopedic/movement impairments (70%), followed by speech/language impairments (50%), intellectual delay (25%) and vision impairment (25%). Number of functional issues ranged from 1 to 11 (mean = 5.1, SD = 3.01; IQR 3 to 7) including difficulty using hands to do activities (85%), moving around (72%), communicating with others (58%) and managing emotions (58%). The majority of the youth (68.8%) had a severe physical disability, as measured by the ASK. As shown in Table 1, levels of family functioning in terms of active–recreation and intellectual–cultural orientation were below 60, indicating a relativity low presence of these attributes. In terms of motivation, similar levels of mastery pleasure and gross motor persistence were observed, when compared to typically developing teens of a similar age [29]. The remaining domains of motivation approached normative levels, apart from negative reactions to failure. Further sociodemographic factors are also described in Table 1.


**Table 1.** Sample Characteristics (n = 20).

#### *3.2. Di*ff*erences in Participation and Environmental Scores in Each Setting*

Following the PREP intervention, on average, youth participated significantly more often (*d* = 0.57, 95% CI [−0.79, −0.14]) and in greater ranges of activities (*d* = 0.51, 95% CI [−1.99, −0.51]) in the community setting with moderate effect sizes, and significantly less often in the home setting (*d* = 2.1, 95% CI [1.79, 2.96]), with a large effect size (Table 2). Youth also participated more often in school, yet a non-significant effect was observed. Levels of involvement and percentages of parents who desired change in activities remained relatively similar pre- and post-intervention across all settings.

*Int. J. Environ. Res. Public Health* **2020**, *17*, 3990


**Table 2.** Setting-level Participation and Environment Measure for Children and Youth mean scores in the home, school, and community (n = 20).

\*\* *p* < 0.01; \*\*\* *p* < 0.001; <sup>a</sup> = 0.058; ES = Effect Size represented by Cohen's *d.*

The results that follow are organized according to scale, restricted to those scales where a statistically significant change was observed.

#### *3.3. Di*ff*erences in Frequency Scores*

Following the PREP intervention a significant, moderate effect on participation was observed in the community setting (ES = 0.57, 95% CI [−0.79, −0.14]), where participation frequency increased, and a significant, large effect on participation was observed in the home setting (ES = 2.14, 95% CI [1.79, 2.96]), where participation frequency decreased. Additionally, a small, non-significant effect was observed in the school setting, indicating an increase in frequency levels (Table 2).

Changes in frequency at the Item-level (within each activity) indicated that across the three settings, nine activity sets out of 25 were found to have a pre-post difference equal to 0.5 or greater, five of which illustrated a statistically significant change (Figure 1). Children participated significantly less at home, specifically in *computer and video games* (Z = −2.33, *p* = 0.02), and *homework* (Z = −2.043, *p* = 0.041). They significantly took on more *special roles at school* (t = −2.46, *p* = 0.024) such as lunchroom supervisor or student mentor roles, among others. In the community setting, youth significantly participated more often in two activity sets: *organized physical activities* (t = −3.11, *p* = 0.006) and *classes and lessons* (t = −2.614, *p* = 0.018), and a positive non-significant change was observed in *organizations, groups, clubs, and volunteer or leadership activities* and *neighborhood outings.*

*Int. J. Environ. Res. Public Health* **2020**, *17*, 3990

**(b)**

**Figure 1.** *Cont.*

#### **COMMUNITY FREQUENCY OF PARTICIPATION ↑\***

**(c)** 

**Figure 1.** Frequency of participation in the home (**a**), school (**b**), and community settings (**c**) (n = 20). 0 = Never, 1 = Once in the last four months, 2 = Few times in the last four months, 3 = Once a month, 4 = Few times a month, 5 = Once a week, 6 = Few times a week, 7 = Daily. ↑/↓ = Mean increase/decrease of at least 0.5. \* *p* < 0.05.

#### *3.4. Di*ff*erences in Diversity Scores*

As previously mentioned, a significant moderate effect on participation diversity was observed in the community section (*d* = 0.51, 95% CI [−1.99, −0.51]), where youth took part in a greater number of activities following the intervention. The diversity scores of home and school activities remained similar post-intervention (Table 2).

Looking at the item-level scores, across the three settings, there were seven activity types out of 25 in which a change of 20% of the sample occurred, two of which were statistically significant based on Chi-square tests. Specifically, in the community, there were more youth participating in *organized physical activities* (χ<sup>2</sup> = 4.31, *p* = 0.037) and *classes*/*lessons* (χ<sup>2</sup> = 7.44, *p* = 0.006). Specific trends (non-significant) were also observed in all three settings. In the home, fewer youth participated in *indoor play and games*. In the school, fewer youth attended *field trips and school events*, and more youth took on *special roles at school*. In the community, there were more youth participating in *community events* and *unstructured physical activities* (Figure 2).

#### *3.5. Di*ff*erences in Environmental Barriers*

While the mean number of setting-level barriers did not change significantly after PREP in any of the settings (Table 2), Item-level examination revealed a change in a range of barriers across all settings. In the community, parents reported a reduction in most barriers (11/16), with 20% fewer parents viewing *physical demands of activities*, and 25% fewer parents viewing *safety of the community* as barriers. Interestingly, a few specific environmental barriers in the home and school slightly increased following PREP, particularly those related to the cognitive and social demands of the activity (Figure 3). *Int. J. Environ. Res. Public Health* **2020**, *17*, 3990

**HOME DIVERSITY**

School-sponsored teams, clubs and organizations Getting together with peers outside of class

**(b)** 

**Figure 2.** *Cont.*

*Int. J. Environ. Res. Public Health* **2020**, *17*, 3990

**COMMUNITY DIVERSITY**

**(c)** 

**Figure 2.** Percentage of youth (n = 18 to 20) participating in each activity in the home (**a**), school (**b**), and community (**c**) settings. ↑/↓ = Increase/decrease in at least 20% of sample. \* *p* < 0.05.

#### **HOME BARRIERS ↓**

**(a)** 

**Figure 3.** *Cont.*

**(b) COMMUNITY BARRIERS ↓**

**(c)** 

**Figure 3.** Percentage of parents (out of 20) who reported an environmental component as being a barrier in the home (**a**), school (**b**), and community (**c**) settings. ↓ = Decrease in at least 20% of sample. \* *p* < 0.05.

#### *3.6. Di*ff*erences in Environmental Supports*

As shown in Table 2, there was a non-significant increase in the mean number of supports in the home after PREP, with a small effect size (*d* = 0.24, 95% CI [−15.77, 5.77]). Mean number of supports remained fairly similar in the school and increased in the community with median effect size (*d* = 0.67, 95% CI [−17.20, 0.33]) approaching statistical significance (*p* = 0.058). Item-level comparisons indicated that parents reported an initial trend of increase in 8/12 supports in the home, 10/17 in the school and 12/16 in the community. Across all three settings, 20% of parents or more added a support in four environmental supports, one of which was statistically significant, i.e., availability of information (15% of parents pre versus 45% post, χ<sup>2</sup> = 4.28, *p* = 0.038; Figure 4). Overall, more parents viewed *supplies* in the home (e.g., sports equipment, craft supplies), *physical layout* of the school, availability of community *programs* and community *information* as supports after PREP.

#### *3.7. Secondary Objective—Association between Child's Characteristics at Baseline and Changes in Participation*

Secondary objective analysis was performed on the three scores found to have statistically significant pre–post differences in objective 1 (i.e., home participation frequency, community participation frequency, and diversity). Visual examination of scatterplots indicated that none of the youth's characteristics at baseline were associated with rate of change in participation scores, with the exception of level of physical disability, measured by the ASK, where initial trends of association were observed. Specifically, youth with more severe disabilities tend to change slightly more in their participation frequency in the home setting, whereas in the community, changes to their participation appear less evident. Family functioning and youth motivation at baseline did not seem to influence change in participation patterns following PREP.

**Figure 4.** *Cont.*

*Int. J. Environ. Res. Public Health* **2020**, *17*, 3990

**(b)** 

**Figure 4.** Percentage of parents (out of 20) who consider an environmental component as being a source of support in the home (**a**), school (**b**), and community (**c**) settings. ↑ = Increase in at least 20% of sample. \* *p* < 0.05.

#### **4. Discussion**

#### *4.1. Changes in Activities and Settings*

After PREP, youth participation frequency significantly increased in the community setting, while it decreased in the home setting. This shift in participation patterns, supported by moderate to large effect sizes, is encouraging and positive as previous research shows that youth with physical disabilities tend to spend more time alone and at home [8]. Moreover, a change towards more community 'out-of-home' activities done with others is considered beneficial. In general, the majority of observed changes occurred in the community, which further supports the impact demonstrated by PREP in previous studies [19–21], and reflects the area in which the targeted activities took place (i.e., the community). The positive changes in specific activities within other settings such as the school (i.e., taking on special roles in school), found in this study, may indicate that youth and parents were applying skills they had gained during PREP in order to explore new opportunities in additional environments. This finding coincides with a qualitative study [20], in which parents whose child received the intervention, indicated that youth "had gained tools" to apply to other settings. Specifically, they expressed interest and showed initiative in taking on new roles and activities in school, for instance, an environment that was not directly targeted by PREP [20].

Youth also demonstrated changes in the types of activities that they were participating in. Participation frequency in sedentary leisure activities at home, such as *computer and video games* decreased, while frequency in active forms of leisure or social leisure in the community, such as *organized physical activities* and *classes and lessons* increased. These changes confirm a trend regarding decreased frequency of participation in digital media activities following PREP, which was initially observed in a previous study of a sub-sample of this cohort [21]. Overall, this initial shift in the types of activities undertaken supports patterns of participation and active lifestyle behaviors that are health-promoting.

Following PREP, involvement levels remained stable. This may be due, in part, to the length of study. It is possible that a 12-week period of time was not sufficient for the youth to experience the level of comfort and sense of social inclusion and belonging that comes with familiarity (of the new activity) often necessary to become fully involved [33]. As such, implementing additional prolonged follow-ups may allow changes to be observed in involvement scores, illustrating the subjective experience that is derived from the activity. Given that the PEM-CY was not completed by the youth themselves, it is possible that subtle changes in level of involvement, a highly subjective construct, would have been difficult to detect by a proxy. Regarding desire for change, it is difficult to determine whether changes occurred or not without qualitative data to complement interpretation. For example, an increase in the number of activities in which change is desired could indicate a newfound motivation, as PREP may have provided parents and youth with new insight into their participation capacity. Alternatively, an increase in activities parents wish to see change in, may indicate that parents and youth are less satisfied with the current level of participation. In-depth interviews, where participants could reflect on their PEM-CY results and the cause of changes observed, could complement interpretation.

#### *4.2. Skill Implementation*

Families likely implemented skills and knowledge obtained through PREP to modify their environments, as shown by the descriptive changes in certain barriers and supports across all settings. For example, the decrease observed in *physical demands* of activities as a barrier in the community setting likely results from coaching families (and other stakeholders) on ways of grading and adapting specific activities to youth's abilities, making activities more accessible and manageable. In addition, accessibility to resources, such as *supplies* in the home and *information* in the community (about activities, services and programs), were perceived as supports by more parents following PREP. This may reflect families gaining new knowledge about the resources available to them and new connections to other families with children with disabilities, allowing for the exchange of information, as well as developing

more advanced advocacy skills. This is a valuable finding as parents who are equipped with knowledge and skills to improve their child's participation, often become "knowledge brokers", who confidently explore opportunities for their families [14].

As expected, environmental barriers encountered in the community displayed a pattern that suggests a post-intervention decrease. However, a few specific barriers were encountered more often in the home and school after PREP, especially those barriers related to the demands of the activity. These specific barriers may have been reported due to novel challenges encountered while starting new activities, such as *cognitive demands*. Additionally, at baseline, parents may not have considered that certain factors could act as barriers. Such an effect has also been reported by Kramer et al. [34], where parents identified significantly more barriers after applying a structured problem-identification strategy. It is plausible that the more one participates, the more barriers one encounters. Further studies are needed to examine this assumption.

#### *4.3. The Impact of Child and Family Characteristics on Rates of Change*

None of the children's characteristics measured at baseline were associated with rates of changes in PEM-CY scores that were found significant. This may suggest that the PREP intervention was beneficial to various youth and families regardless of their level of motivation and family functioning. Presumably, this speaks to the nature of the intervention where youth participate in an activity of choice (which can increase motivation) and where family barriers are addressed (as environmental barriers to remove). Physical functioning at baseline showed an initial trend of association with changes in participation outcomes which concur with previous research, where the effects of PREP were influenced by the number of functional issues at baseline [19]. This may be explained by the fact that PREP considers aspects of motivation and family environment but does not directly target functional issues. However, given the sample size, there was not enough power to detect clear patterns of association between child/family factors and changes in participation.

#### *4.4. Limitations, Strengths and Future Directions*

While this study included a relatively small sample size, we had sufficient power to detect changes in participation (primary objective), which has contributed an additional piece of evidence towards PREP's effectiveness as well as preliminary evidence towards its ability to foster positive change in participation beyond its three specific targeted activities. In addition, this was the first study to evaluate pre-post data using the PEM-CY, providing support for the potential ability of this tool to detect change following an intervention. However, as the PEM-CY is a parent-report measure, it may not have captured the youths' subjective experience, particularly in the desire for change and involvement scales, as those aspects of participation did not display significant differences post-intervention. Furthermore, the lack of qualitative information may have limited the interpretability of changes in these areas of participation. Overall, the results from this study are promising and warrant larger and prolonged trials in order to better capture all potential changes resulting from the PREP approach. In addition, combining results with qualitative interviews would better support interpretation of the PEM-CY, particularly with regards to parent's desire for change. Finally, further studies could also contribute evidence towards the PEM-CYs responsiveness to change.

#### **5. Conclusions**

This study contributes to a growing body of evidence that environmental-based interventions, such as PREP, are effective at enhancing participation. By equipping families with solution-based strategies, PREP may empower them to explore new opportunities beyond their initial target goals and potentially carry-over skills into other areas of participation. Further, larger and prolonged studies can be used to capture change in the subjective aspects of participation (i.e., involvement and desire for change). Consequently, this can support the multiple benefits that can be generated by one single intervention, improving the provision of rehabilitation services in pediatrics.

*Int. J. Environ. Res. Public Health* **2020**, *17*, 3990

**Author Contributions:** Conceptualization, D.A.; methodology, D.A.; validation, D.A., C.H. and N.M. (Noah Margolese); formal analysis, C.H., L.B. (Louiza Benmohammed), L.B. (Liam Bienstock), N.M. (Nathan Menezes), N.M. (Noah Margolese), B.B. and D.A.; investigation, D.A.; resources, D.A.; data curation, D.A.; writing—original draft preparation, C.H., B.B., L.B. (Louiza Benmohammed), L.B. (Liam Bienstock), N.M. (Nathan Menezes); writing—review and editing, C.H., B.B., L.B. (Louiza Benmohammed), L.B. (Liam Bienstock), N.M. (Nathan Menezes), N.M. (Noah Margolese) and D.A.; visualization, C.H., B.B., L.B. (Louiza Benmohammed), L.B. (Liam Bienstock), N.M. (Nathan Menezes), N.M. (Noah Margolese) and D.A.; supervision, D.A.; project administration, D.A.; funding acquisition, D.A. All authors have read and agreed to the published version of the manuscript.

**Funding:** This research was funded by Canadian Institutes of Health Research, grant number 130571.

**Acknowledgments:** This study was funded by CIHR. It was conducted in partnership with Lethbridge-Layton-Mackay Rehabilitation Centre (Mackay site) and the Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR).

**Conflicts of Interest:** The authors declare no conflict of interest.

#### **References**


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International Journal of *Environmental Research and Public Health*

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